From the APP: Smith “Driving Force” Behind Congressional Working Group on Lyme; Local Constituent-Activist Named Member

Home > Uncategorized > From the APP: Smith “Driving Force” Behind Congressional Working Group on Lyme; Local Constituent-Activist Named Member

For decades Pat Smith has sounded the alarm on the problems faced by people with chronic Lyme disease, from unreliable testing to a dearth of treatment options.

Now she is making that case to her most important audience yet: Congress.

The Wall resident has garnered a spot on the 14-person congressional working group that could recommend wholesale changes to federal Lyme disease policy. The group began meeting last month in Washington, D.C.

“This could be really significant,” Smith said. “It’s the first time we have had patients’ voices at the table, and advocates and treating physicians.”

Lyme disease affects nearly 400,000 people a year in the U.S., and New Jersey has the second-most diagnosed cases (after Pennsylvania). For many who are diagnosed promptly, the standard month-long course of antibiotics mitigates the illness. But detection is difficult and, for thousands of folks, the symptoms can continue for months or years.

Smith knows from experience. In the 1980s Lyme disease afflicted two of her daughters, one of whom missed four years of school. She founded the nonprofit Lyme Disease Association and traveled the country to raise awareness.

“Pat Smith will be a force for good on the working group,” said U.S. Representative Chris Smith (R-4th), a driving force behind the creation of the working group and a longtime ally of chronic Lyme patients. “She has been an integral advisor on many legislative projects, including my first and several subsequent Lyme bills, and has fought for Lyme Disease patients with tenacity, expertise, empathy and skill.”

The two are unrelated.

Smith knows from experience. In the 1980s Lyme disease afflicted two of her daughters, one of whom missed four years of school. She founded the nonprofit Lyme Disease Association and traveled the country to raise awareness.

“Pat Smith will be a force for good on the working group,” said U.S. Representative Chris Smith (R-4th), a driving force behind the creation of the working group and a longtime ally of chronic Lyme patients. “She has been an integral advisor on many legislative projects, including my first and several subsequent Lyme bills, and has fought for Lyme Disease patients with tenacity, expertise, empathy and skill.”

The two are unrelated.

So far Pat Smith is impressed with the working group, which consists of seven federal government representatives and seven members of the public. In their meetings last month, they heard in-person testimony from several chronic Lyme sufferers.

“This would have been the first time many of the federal officials have heard these horrific stories from patients on the difficulty of obtaining treatment,” Pat Smith said. “It was very impressive. The people who heard these stories had to be blown away.”

The proceedings were streamed to the internet. Among those watching was Eileen Valerio, an elementary school nurse in Mount Laurel. The Burlington County resident is all too familiar with chronic Lyme — she’s had it, and so have her husband and son. Her brother, Pennsylvania resident Thomas Braddish, died from it in 2015…

The root of the problem: The influential Infectious Diseases Society of America declines to recognize chronic Lyme in its clinical practice guidelines. As a result, little is done in terms of screening patients for Lyme beyond a blood test that is known to be unreliable. Valerio, Smith and other advocates believe this leads to an abundance of misdiagnosed cases, especially among children.

Valerio has gotten to know Pat Smith, and is hopeful her inclusion in the working group is a sign that change is coming. The group will present a report of recommendations to the U.S. Department of Health and Human Services and both houses of Congress by the end of 2018. They meet again in February.

The first step, Pat Smith said, is getting the federal medical establishment and lawmakers to acknowledge the suffering. Then resources should follow.

“Once congress gets hold of the report and understands the magnitude of the problem, hopefully we’ll be able to get the research directed where we need it,” Pat Smith said. “Right now $40 million is all this gets from the federal government. But I think at the very least, this will direct that money to the areas of need. That wasn’t necessarily happening before.”